High Ionized Calcium and Taking Vitamin d

by Kathie
(CT)

I had recently posted about Vitamin D and Blood Calcium Levels and your response was you do not feel that my high intake of vitamin D is the cause of my high blood calcium level as my vitamin d level is in normal range.

I failed to point out that I am on prescription D, which according to your website is D2. Should I stop the script and go back to taking D3?

Also, my whole body feels like one big tooth ache, to the point where it keeps me awake at night. Also, my mouth inside is numb (I cannot feel the "hot" in hot foods, liquids) have no interest in doing anything I normally do and my handS and feet are tingly and often fall asleep.

I have no short term memory to speak of which makes me have confusion. My ionized calcium came back in the normal range. Due to my research here and on parathyroid.com I am convinced I have hyperparathyroid but with my normal ionized calcium I don't know.

I do have hashimoto's with nodules. Any other ideas? thank you!!!

Comments for High Ionized Calcium and Taking Vitamin d

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See an endocrinologist..
by: Kerri Knox, RN- The Immune Queen!

Hi Kathie,

I wish that you would have responded to the previous thread because I can't find it as I have almost a thousand questions outlined on my site and there is just simply no way of effectively looking for an older thread when I don't have the title or the URL.

But if I recall, I told you that you should not take ANY vitamin d or ANY calcium until you see an endocrinologist.

So, please do not take any vitamin d or calcium until you see an endocrinologist and get the OK from him to do so and be worked up appropriately for parathyroid disease. While your symptoms COULD be simply due to vitamin d deficiency, they could also be due to a serious endocrine problem.

Call your doctor right now and insist that he give you a referral to an endocrinologist.

Kerri Knox RN Immune Health Queen

Kerri Knox, RN- The Immune System Queen
Functional Medicine Practitioner
Immune System

more info...
by: kATHIE

my original post: "I have just been told by my doctor that I have high Blood Calcium Level. One of the causes can be high doses of Vitamin D.

I have been on 50,000 IU of vitamin d every other week with no real improvement so was put on 50,000 IU every week which I have been doing for approx 6-8 weeks now. Also in this same blood work my Vitamin D level is 47.

Even though my D level is good, could it still be the possible cause of my high calcium level?" Thank you, i did not know that you would read comments.

As I have poor memory, I also forgot to add that my ANA goes from normal to 1:320 to normal to 1:60 and so on and so forth. My last TSH was just below normal as well. My Vitamin D2 was 37 and my D3 was 10 for a total of 47. Oh, I also have vitiligo, which started a couple of years ago at age 51 which I have read this morning is autoimmune.

I do have an appt with an endocrinologist but not until the end of May. I have decided to further research as I am really starting to feel worse than I have ever felt.

Again, thank you so much for all your help and the great information you provide us.

Sit in the endo's office
by: Kerri Knox, RN- The Immune Queen!

Hi Kathie,

Two thoughts. Don't do any more research. You need to see an endocrinologist ASAP. If you don't have an appointment for 2 MONTHS, UGHHH!! Call the office and tell them that you are feeling terrible and need to get in sooner.

If they can't get you in earlier, then I suggest that you go to the office WITHOUT an appointment, check in and politely say that you are willing to wait every day until someone cancels and you can take their spot.

You might be surprised how quickly this works if you get there early in the morning and wait. Often, they can 'Fit you in' where there were no spots before!!

You need to get this resolved ASAP if you have been feeling worse after your vitamin d level has resolved. That is NOT normal and your symptoms are NOT due to Vitamin D deficiency with a level of 47.

Seriously, that's not OK to wait two months to see someone, so either get a referral to someone else or sit in the endo's office until they can see you- and NO calcium or vitamin d until then.

NEXT: If you have vitiligo and a high ANA, these - and memory loss- are both signs of Gluten Sensitivity or Celiac Disease!!

Since no one has thought to test you, you need to ASSUME that you have Celiac Disease and go on a Gluten Intolerance Diet IMMEDIATELY while you are waiting to see a doctor.

Gluten Intolerance could explain many or your symptoms.

You should also consider doing Vitamin B12 Deficiency Treatment in the meantime- even if you've been tested and your Vitamin B12 Level is normal- or if you've not been tested.

Taking Sublingual Methylcobalamin B12 Supplements is VERY safe and you can at least 'Rule Out' vitamin b12 deficiency as a problem if you do this.

But see an endo immediately.

Kerri Knox RN Immune Health Queen

Kerri Knox, RN- The Immune System Queen
Functional Medicine Practitioner
Immune System

Thank you!
by: Kathie

I was able to see in the interim my rheumatologist who had ordered the calcium test originally. She had also ordered an "ionized calcium" test which came back smack in the middle of the normal range so she said my high calcium level was okay, that the ionized was the important one. (Im thinking WHAAAT)!!

I felt confident enough from your reply and all the great information on your website that I stood my ground and wouldn't take no for an answer. Armed with all copies of my blood work for the past two years, I made her go through every positive, too high or too low results, what they were for and what they meant. I also printed my post and your replies here and let her have it.

Needless to say I "read her the riot act".
One of my blood counts was 9,348 and the high normal was only 3,000, and she never pursued it, said I probably had an infection.

Well, HELLOOO. Also, gee, i might just have gluten after all... I left there with a blood order and had 20 vials of blood taken. Hopefully now, thanks to you, I will have answers!! :-)

Yeah, Yeah!!
by: Kerri Knox, RN- The Immune Queen!

Yeah.

Please let us know how the blood tests come out and what your doctor says. I'll be soooo happy to hear if you get some answers.

And you're a good example for people here. You HAVE to be assertive with your doctors- and when you are, you will often be able to 'get somewhere' with them. They are like 'pushover' parents- if you throw a tantrum or make a scene, then you'll often get what you want!!

Kerri Knox RN Immune Health Queen

Kerri Knox, RN- The Immune System Queen
Functional Medicine Practitioner
Immune System

almost done
by: Kathie

received a call from the rheumatologist today, the majority of my results are back. Many are in the high normal but my thyroid antibodies are very high and I need to see an endocrinologist asap.

I called endocrinologist and was told again, no openings and my appointment is not until May 24. When I called last week I requested a wait list and now to find out I am second on this list. I will call every day.

After doing one small task a day I turn into a walking zombie. The simplest of things just knock me down for the count. Also, my legs are now hurting/tingling all the time.

Could part of the progression be due to the fact I have stopped my vitamin D due to the high Blood Calcium Level (not ionized, that was normal).

thank you!!

Vitamin D, fatigue, etc.
by: Kerri Knox, RN- The Immune Queen!

Hi Kathie,

Well, your fatigue, tingling, etc. COULD be because you are off of your vitamin d, but it's not likely with a vitamin d level of 47. That's decently high- but there are some people who still feel bad with levels at 47 ng/ml if they are not taking it.

Unfortunately, I have to advise you NOT to take it until you get the OK from the endocrinologist. I know that the ionized was normal, but there is enough question with the high serum calcium that you really need an endocrinologist to tell you that it's OK to take again.

So, my take on your labs is that it's likely that you have Gluten Sensitivity- did your doctor draw a Celiac panel?

So, your current labs suggest that you have some sort of autoimmune problem. And there are MANY researchers who believe that ALL autoimmune disease stems from Increased Intestinal Permeability- which almost always begins with a combination of stress and gluten sensitivity.

Since you are practically incapacitated at this point, you may want to take measures into your own hands and start on a Gluten Intolerance Diet ASAP to see if that might be part of your problem.

If you are gluten sensitive, it's also likely that you have Vitamin B12 Deficiency. That could be the cause of your profound fatigue and numbness and tingling. It would be VERY safe to follow the instructions on the Vitamin B12 Deficiency Treatment page while you are starting the gluten free diet and waiting for your appointment!

You just might be VERY surprised at how you feel.

Kerri Knox RN Immune Health Queen

Kerri Knox, RN- The Immune System Queen
Functional Medicine Practitioner
Immune System

saw the endo
by: Kathie

I saw the endo yesterday and an ultrasound was ordered. my nodules grew in the last 6 months from 5 & 6mm to 6 and 9mm, and a new nodule was detected on the right side which is 5mm. Nodules were stable for several years.

My TPO is 215.6 with a normal high of 3.9
My B12 is in normal range and celiac was all negative and/or normal range as well.
I am still convinced that I have hyperparathyroidism.

I was told that the parathyroids would not show on the ultrasound unless they were "inflammed". Dr. doesn't have a clue as to why my calcium is high with my vitamin D level at 47.

I did, however, forget to tell her that I was taking Prescription Vitamin D 50,000IU and had stopped taking it a couple of weeks ago (after test results), and forgot to ask about restarting it as well.

I'm still confused.... I do still have that May 24th appt for a follow up date. The only symptoms I am having now is extreme fatigue and temperature intolerance (hot and cold) the all over body pain has pretty much subsided.

get a PTH level tested
by: Anonymous

Ask your endocrinologist for a PTH (parathyroid hormone) level. I have the opposite problem.

I have normal serum Calcium, but I have high normal and one elevated ionized calcium. My last PTH was 117 with a range of 12-72. I have read the parathyroid site and feel I have HPTH too. I also have osteoporosis and almost every other symptom.

Unless your PTH is below 20, a high Calcium level is not normal and it sounds like you've had highs for a while.

good luck!!

results
by: kathie

Hi Kerri,
I wish these posts were dated, I wanted to do an update.
Yes, I was B12 deficient and I have been on B12 shots for months now. I find I cannot go more than 3 weeks without a shot, my level drops too much after that period and I am too fatigued.
I can't tell you how much better I feel getting the shots.
My PTH and calcium still fluctuate and my thyroid is now under control with a natural thyroid med. I was eating gluten free and doing very well with that until we had a storm and lost power for 10 days, we had to venture out to the restaurants to eat and unfortunately I am having a hard time getting back to gluten free even though I feel like crap.
Coming here to this site is very motivating,
thank you!!!!!

the saga continues
by: Kathie

Fast forward to 2012. I have just found out my pregnenolone and dhea are very below optimal and my cortisol spikes mid day as per a 4xs a day saliva test. Some days I feel decent and have some bursts of energy where I can get some housework done or go to the market. Other days I cannot get out of my own way. My memory is totally shot, I had a friend ask me what I did all summer, i honestly couldn't even remember. Could all this be due to the low levels? I am still on D, B12 shots and Nature-throid for Hashi's. AU

you're mistaking the symptoms for the problems
by: Kerri Knox, Registered Nurse

Hi Kathie,

Unfortunately you are mistaking the symptoms for the problems. Low B12 is a symptom, not a problem in and of itself. In other words, something is CAUSING your B12 deficiency- as well as your Adrenal Fatigue.

Low cortisol isn't caused by B12 deficiency, but something else is causing both Adrenal Fatigue and low b12.

Please read my pages on adrenal fatigue and Vitamin B12 Malabsorption for more info on what might be causing your problems.

Kerri Knox, Registered Nurse

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